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Anyone with leiymosarcoma?

wing and a prayer
Posts: 1
Joined: Oct 2009

Hi there,
In April of 2009 I was diagnosed with high grade uterine leiymosarcoma. Anyone out there with a similar diagnosis?

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daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

My maternal first cousin who lives in Germany has what you have. I have UPSC - papillary serous endometrial. I wonder if there is any genetic connection to these rare cancers. She was raised in Germany, me in the US. She has been battling this for a couple of years.

I wish you well. Blessings, Mary Ann

Mana's picture
Mana
Posts: 3
Joined: Jan 2010

Hi wing,

I was just diagnosed with leiomyosarcoma too. I think that there are others on the board, although the spelling is so hard that searches sometimes come up empty.

I found references that other members with leiomyosarcoma are RuthRose,Gma,selena, Reneekarin1969, and more, although some are really old.

catbird
Posts: 33
Joined: Sep 2009

i was dig w/lms 8/2009. just finished chemo. below is a web site for people with lms only. Also, look under sarcoma in the "discussion boards" - there's 2 for lms

http://listserv.acor.org/archives/l-m-sarcoma.html

jnlim
Posts: 4
Joined: Mar 2010

Are u on chemo now? I was diagnosed in Nov 08. LMS Stage 4b. Went thru 6 rounds of chemo ( doxorubicin and infosamide). had A radio frequency ablation done to burn off the resistant tumour in my liver in March last year. Was put on mecgace for 8 months an put on a lot of weight. About 1 kilo a month. Oncologist had change it to femara. Lost weight but other side effects. Stiff joints and very painful hand arthritis!!!

BITMOYD
Posts: 2
Joined: Apr 2010

I just found out three days ago that I have leiomyosarcoma in my uterus. I am still trying to deal with all of the unknowns. I have a 7yr old son and I have no idea what to tell him at this point since my OB isn't able to tell me anything about the cancer. I have two oncologists lined up, appts have been made, now I am just waiting for next week to get here so I can get more info.

jjmb126
Posts: 15
Joined: Jul 2004

No disrespect to this board but you might find more immediate information on Hystersisters -

http://www.hystersisters.com/vb2/forumdisplay.php?f=6

as this board is very difficult to navigate. Having said that, if you know what to look for, its an invaluable resource. There other links out there -

http://www.mskcc.org/mskcc/html/13242.cfm which is the link to Sloan Kettering

and http://www.leiomyosarcoma.info/steptwo.htm, this one deals in with all leimyosarcoma and has a page devoted to Uterine Leiomyosarcoma.

Whatever you read, remember every case is unique and your doctors will be the best resource.

tracyrenaewilson's picture
tracyrenaewilson
Posts: 5
Joined: Jul 2010

Hello my name is Tracy Wilson. I am here if you need any questions answered or any ideas??? I was diagnosed almost 2 years ago and I have been cancer free since. Please let me know how things are going! I can help you through this!

bea-mil's picture
bea-mil
Posts: 110
Joined: Jun 2010

Can you please tell what kind of treatments you had?

tracyrenaewilson's picture
tracyrenaewilson
Posts: 5
Joined: Jul 2010

I had pelvic radiation and internal vaginal radiation. It took and still is taking a while to get over! All is good mostly! I go to my 3 month on Friday to see how things are going!

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